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临床试验/ISRCTN18340272
ISRCTN18340272进行中(未招募)未知

A natural history study of congenital myasthenic syndromes to establish reliable outcome measures suitable for clinical and research assessment

Oxford University Hospitals NHS Trust0 个研究点目标入组 50 人开始时间: 2022年11月28日最近更新:

试验速览

阶段
未知
状态
进行中(未招募)
入组人数
50

研究概览

简要总结

暂无简介。

研究设计

研究类型
Observational

入排标准

性别
All

入选标准

  • 1. Participants with a confirmed genetic diagnosis of CMS, who are referred to the Oxford CMS service for their clinical management
  • 2. 0-100 years of age
  • 3. Participant is willing and able to give informed consent for participation in the study
  • 4. The participant must be able to understand written and spoken English
  • 5. Able to attend clinic every 6 months for face-to-face assessment with a physiotherapist

排除标准

  • 1. Non-CMS medically or psychological conditions that may affect the OCMs, as judged by the medical team
  • 2. Participants not compliant/unable to attend regular reviews in Oxford
  • 3. Participants involved in other CMS research (e.g. novel therapies), which may impact the study assessments

研究者

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